If you are not Stage IV but have questions, you may post here
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Hi Irishlove: There is a thread in this forum for those with RAD50 variants. I've pasted the link below. The second link will give you some info about RAD50, a DNA repair gene. Hope this is helpful and best of luck!
https://community.breastcancer.org/forum/112/topic...
https://www.ambrygen.com/sites/default/files/web/u...
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Murfy, thanks for the links.
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Hello,
I have a question that I'm hoping someone might help answer. My CT results just came back in to determine my final staging and they said it looked fine but there were tiny benign and nonspecific lumps found in my liver. They said this is very common but that I'll need a follow up scan in 6 to 12 months.
Should I be worried? If it's so common why would they want to expose me to another scan?
Thank you for any feedback
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Hope, it's common, but that doesn't mean they can be ignored. If I was in your situation, I would hope my onc would monitor my liver functions and TMs prior to another scan. Those not changing could be some reassurance. No one wants to expose us to additional scanning, but not ascertaining for sure that something is benign would be medical negligence, and would leave everyone uncertain about what those liver lesions are. A scan in 6 to 12 months, assuming no change, will give everyone peace of mind.
Hope this helps. Deanna
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I am wondering how todistinguish between joint pain caused by arthritis and that resulting from bone mets? I am experiencing pain in my left knee and right hip which is helped by Aleve. My PCD does not seem concerned.
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Hi Maggie, the typical locations for bone mets are the ribs, spine, pelvis, skull and the long (upper) bones in the arms and legs, although it is possible to find mets in unusual locations such as lower legs, wrists, etc. The fact that your pain is in your joints, not the actual bones themselves, and that the pain is relieved with Aleve, is likely why your PCP believes it is due to arthritis. The Aleve is likely reducing the inflammation that arthritis can cause in the joints.
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hi i have mbc not sure what stage but was told i will have this for the rest of my life it was in my t 10 and rib, i also have it in my plevic. i have been on verzenio 150 mg 2x a day and shots once a month it seems to be working as per the last pet scan, plus i take anti-nausea pills since sept 2018.
i take baking soda 1/2 teaspoon 2x a day for my stomach and my kidneys, seems to be working for me.
my question is 1. does your body ever get use to the side effects. 2. does anyone have any weird side effects. i have an excessive amount of saliva cause problems eating sleeping and breathing, sometimes it seems like i am drowning. 3. i also have an excessive amount of flem in my throat causing me to cough up big white heavy flem, musinex helps, i take it 2x a day.
after that i have some of the usual side effects they list.
i am hoping other people will list some of their weird side effects so i do not feel so alone.
THANK YOU
GODS BLESSING
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softsailor, I'm so sorry you need to join this group. I'm glad your treatment is working for you.
For every drug different women have different side-effects. And some of them are weird. I'm a person who tends not to get the 'normal' SEs, which is nice, but instead my oncologist spends time saying "that's weird".
For instance, when I started Halaven three months ago I got mouth sores and all my hair fell out at once. All he could say was "that's just not normal". With Verzenio I had more trouble with the Immodium I took for the diarrhea than the diarrhea itself. I ended up living with the diarrhea and cutting way back on the supportive medications.
Another for instance. Back in the old days when I was taking AC one hand turned more suntanned than the other. All we could do was shake our heads.
I would bet that your problems with saliva and phlegm are related. Or rather from the same cause. I think there's something the doctors can give you to help with it. At the very east antihistamines might help.
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Hi Softsailor -
Here is a link to the main Verzenio thread 🙂 in case you are interested....
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Hey Pajim 🙂 I hope your treatments are going okay, well losing hair is not okay, but hoping the Haloven is effective.
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my question for all of you! How many were IDC after core biopsy then at mastectomy became stage 4? I am ER+ PR+ HER2 negative my surgery is April 1, 2019
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beep7bop, I'm not sure how you would become Stage 4 at the time of a mastectomy. The way de novo mets (mets upon initial dx) is most often discovered is via a Petscan or other imaging, often ordered because a patient has a very large breast lesion and/or sufficient multiple node involvement to ensure chemo, and that makes full body imaging prudent, to be sure it hasn't gone beyond the nodes. Or a scan might be ordered prior to surgery IF a patient has specific pain somewhere and mets needs to be ruled out because it could drastically change the treatment plan. But mastectomy surgery probably would not reveal a distant met, such as in a vertebrae or rib. Hope this helps, and try not to get ahead of yourself. If you have any concerns about mets at this point, be sure to voice them to your surgeon, who can decide if further imaging prior to surgery would make any sense in your situation. And good luck on April !. Deanna
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I have had elevated liver enzymes consistently for a year or more. I've had an MRI over a year ago on my abdomen and then an US in November....neither showed lesions. Just fatty liver. My PCP is sending me to a gastro and I'm beginning to worry as the appt is tomorrow. I guess I'm asking if it is possible to have cancer without lesions showing on these scans. Im completely exhausted most of the time. This has me concerned. Any thoughts?
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I have a question My BMX was Tuesday and I found out that my IDC was also in my Sentinel node and axillary MO nodes. Does that mean its metastatic? Or is it only metastatic when it reaches an organ? I was too afraid to ask my BS yesterday when she came to check on me post-op and to check on her work
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Nanette,
have you had any scans? I'm assuming you haven't since they only discovered the nodes at the time of surgery. It doesn't necessarily mean you are metastatic, no. Your stage will likely no longer be staged as 1A, but a little higher. However, there are so many factors to staging. Only a scan can confirm whether or not you are metastatic. I believe when it's only in the axilla nodes, they will call it "locally advanced" vs "distantly advanced" when it's in organs/bones
I assume the next step should be a pet scan to see if it's anywhere else. But don't panic yet!
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I was recently diagnosed with a recurrence in a lymph node above my clavicle. CT was fine, no evidence of mets, and I just got the results of my pet/ct today. It's only that lymph node. Brain, liver, lungs, bones, all are fine. But my onco said the surgeon she was referring me to won't do the surgery because I am stage iv. That doesn't make any sense. I've never heard of stage iv that didn't include mets to lung, liver, brain, or bones. Plus, my onco is still holding out the possibility of a cure for me and that sure doesn't sound like stage iv.
I am horrid, horrid confused.
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Princess, I’m sorry about your recurrence, but glad it’s so limited. What your onc has told you is outdated thinking on chest node involvement. Here are the newest guidelines, which puts you @ Stage IIIC. I would consider finding an oncologist who is more up on current research, thinking and treatment protocols.Hope this helps to ease your confusion! https://www.cancer.net/cancer-types/breast-cancer/stages
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Thanks! I'm not sure it was my onco who said that, but rather her reporting the surgeon's rationale for not removing the lymph node. Her call caught me in the parking lot of the grocery store, which was rather loud and made understanding her difficult.
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I feel incredibly stupid for asking, but can someone get metastasis from a < 2 cm, node neg, grade 2, Estrogen/progesterone pos, Her2 neg, IDC or ILC?
I had a 1cm, 0/24, E/P + Her2 - IDC in 2003 (Lumpectomy, re-excision, chemo, rads)
1.3 cm E/P + Her2 - ILC in 2018. (Mastectomy w/reconstruction only- no nodes removed because whole fat pad removed in 2003)
I'm under the impression that if I had a recurrence it would be at the mastectomy site or other breast before it would metastasis anywhere else in my body. I refused AI's for reasons I won't go into other than I made that decision due to my other health issues.
I had surgery in Jan, saw my breast surgeon for one follow up and won't see him again until the middle of the summer. I'm only seeing a plastic surgeon now. I only discuss surgery issues with him. I saw a medical oncologist once. I had questions after my appointment and sent an email with three questions . By the time she reached out to me about my questions it was over three weeks later and ironically (or not) I onlygot a message on my answering machine that she called to answer the questions a few hours after I cancelled my next appointment with her. I left a message with her nurse telling her why I canceled the appointment and why I refused the IA and said she can call me but I doubted she would change my mind. I never heard back and it's been over a month.
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mavericksmom,
YES you absolutely can have a metastasis even if there is no cancer in your breasts. Id suggest you have another visit with your oncologist. If your not a candidate for chemo now you may be soon enough if you get no other treatment.
There are other treatments besides Aromatase Inhibitors. Did the MO discuss Faslodex with you? Good luck
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mavericksmom,
YES you absolutely can have a metastasis even if there is no cancer in your breasts. Id suggest you have another visit with your oncologist. If your not a candidate for chemo now you may be soon enough if you get no other treatment.
There are other treatments besides Aromatase Inhibitors. Did the MO discuss Faslodex with you? Good luck
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Tangandchris, how did your gastro appt. go?0
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Thank you gailmary. When I decided not to take the AI's, I did that with the mind set that I absolutely will get another recurrence, but I am taking my shot at quality of life over quantity. I had 15 1/2 cancer free years between recurrences and yes, I could get another in a year..... or maybe never. At my age there is a good chance I will die of something else before I get a recurrence. I will talk about it again when I see my breast surgeon in the summer but I won't go back to the medical oncologist because she is set on hormone therapy and I am not.
I will look up the faslodex. I never heard of it.
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HiLadies,I would like to know what would be the signs of recurrence in chest wall. How is it detected?Symptoms
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Hi Jen,
I have recurrence in chest wall that presented as tiny firm nodules under the mastectomy scar. diagnosis skin mets. Still waiting on confirmation of cancer receptors and Her2. Not enough cells in initial core biopsy so I had a surgical biopsy last week. Once we know status them we can workout treatment plan .
Good luck x
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hello ladies,
I've been feeling a spot of soreness on where the bones on the left chest, above MX side. I felt it there actually started during radiation. It only feel little sore when I press on it. Could this be bone Mets? Thanks.
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hi Mavericksmom,
I admired your decision not to take AI because actually looking back now and learned more about cancer. I began to think it's more pharma thing to make money. There are people who recur with AI and you are proof that you can survive without it. I think the recurrence has more to do with whether you had chemo or not, your lifestyle, what you eat or drink.
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Thank you helenlouise
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Hi Mavericksmom,
Sorry to be so late to chime in but I wanted you to be aware that yes, you most definitely can become stage IV initially with a small tumour and without a local recurrence after many years. I'm case in point. I was initially diagnosed as stage IIa with a tumour about 1.8 cm, ER+ PR+. HER2- I had chemo, Tamoxifen for 5 years and then an AI for 3 years. I had few, if any side effects from the hormone therapy once I switched from Femara to Arimidex.I was off treatment for many years when suddenly, almost 17 years later, I experienced shortness of breath and a cough. I had a lung full of fluid due to pleural mets and also had bone mets. I had been on a clinical trial so was monitored by the Cancer Agency and had annual mammograms but did not have a local recurrence.
Yes, people can recur while on an AI but it’s a powerful tool in the fight against hormone positive cancer. While it appears I am now resistant to the AI, I have had good success with Faslodex, another hormone therapy available for stage IV only.
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One thing many people don't realize is that breast cancer doesn't follow a linear line, meaning it doesn't necessarily progress from stage 1 to 2 then 3 then 4. Maybe people think it does because there's a lot of hype about early detection = cure, which isn't actually true in all cases,
Take someone like me, I had annual mammos for years then boom, stage 4 from the start. I never had any indication that I was at stage 1, 2 or 3. Some people will act like you did something wrong, weren't diligent or didn't get the right tests when you end up with advanced cancer, but it isn't always something discovered in its early stages regardless of vigilance or testing.
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